Belfast Telegraph

Sunday 23 November 2014

'I feel Matilda was destined to make people realise babies are vulnerable'

Finding hope: Jennie and her family have raised £30,000 in memory of baby Matilda Mae
Finding hope: Jennie and her family have raised £30,000 in memory of baby Matilda Mae
Matilda Mae
Well-known broadcaster Anne Diamond

Ben Wakeling meets the mother who hopes that the experience of losing her daughter to Sudden Infant Death Syndrome can help others avoid the same tragedy.

By her own admission, Jennie's house is a bit of a mess. Not only is her family preparing for a family holiday, but they are renovating the entire first floor in preparation for the arrival of a little girl, due this summer.

As they stand currently, the rooms are perfectly fine, but they harbour the memories of rushing paramedics, policemen and the image of Jennie's husband performing CPR on their nine month-old daughter, Matilda.

"It's where they tried to save her," recalls Jennie. "Everything has gone – and it's all going to be new."

Matilda Mae was Jennie's third child, after the birth of her twins, Esther and William, in July 2010. They were born prematurely, at 27 weeks, a fortnight after Jennie underwent emergency surgery for a twisted bowel. "They were in hospital for 59 days, which I thought was the worst thing that was ever going to happen to us," she says, with a wry smile. "They'll be four in July and they're perfect in every way!"

It was on the twins' first birthday that Jennie discovered she was pregnant with Matilda. Considering that she had been told that she and her husband were unable to conceive naturally – Esther and William are the result of IVF – the news came as a wonderful surprise.

Nine months later, in stark contrast to Jennie's previous birth experience, Matilda arrived without a hitch, born on her due date. Jennie had the water birth she had always dreamed of; after entering the hospital at 5.30 in the morning, she was discharged and home in time for tea. "She was my healing baby," explains Jennie. "She righted all the things that had gone wrong with Esther and William."

Instantly, Matilda made an impact. Jennie would be stopped in the street by complete strangers who would exclaim at her daughter's beauty; for Matilda was delightful, as photographs prove. Beautiful brown eyes sparkle in a face that is always smiling, forever cheeky ("She liked sticking her tongue out a lot!").

When Matilda was nine months old, the day ended like any other. Jennie put her down to sleep in her cot at 6.30pm; she was a little unsettled, so when her husband returned from work he went upstairs to calm her back down. Then, Jennie wrote while her husband watched a film. At 10.30pm, Jennie walked into the bedroom to feed Matilda and couldn't hear her breathing. The room was pitch black and Jennie put her hand down to where she should have felt her; she wasn't there. Matilda had turned herself around and was at the other end of the cot with her blanket over her head.

"She had a little standing lamp next to my bed and I turned it on just a little bit and took her out," recalls Jennie, her voice becoming fragile. "I noticed that she wasn't alive and called my husband, shrieked, screamed ... he came running and tried to save her."

Jennie's mother, who was with them at the time, called the emergency services. The paramedics gave instructions to Matilda's father by phone as they raced to their house.

"They were guiding him through CPR; he was doing that, I was screaming hysterically. The ambulance came really quickly, along with a paramedic car and two police cars. They came in and took over from my husband."

The paramedics sent the couple downstairs whilst they tried to save Matilda: performing CPR, injecting her with adrenaline and shocking her heart. After a while they came downstairs with awful news. Matilda was dead.

She was one of 300 babies who die each year in the UK from Sudden Infant Death Syndrome; according to The Lullaby Trust, a total of 103 infants aged under 12 months died from SIDS in Northern Ireland from 2000 to 2010. For the same period, there were nine deaths in Northern Ireland of children over the age of one.

Many unexpected infant deaths can be explained following a post-mortem examination, revealing an infection, for example, or a metabolic disorder. Those deaths that remain unexplained are registered as SIDS. The latest research indicates that there is no one abnormality or condition that results in SIDS, but rather that it is a combination of factors that can affect babies as they progress through a vulnerable state of development.

In Matilda's case, the coroner was clear; she did not suffocate, she did not overheat. She was fit and healthy and there were no signs of any underlying cause, but one night her heart stopped beating.

Matilda and her family were taken to hospital, where staff placed her in a Moses basket and gave the couple the time to say goodbye; Jennie screamed at her daughter to wake up.

Hours later, at half past four in the morning, they were told they could go home. Jennie was given a book written by The Lullaby Trust – then known as the Foundation for the Study of Infant Death – which she clutched in her hand for the whole journey.

Once home, they had an hour or so before Esther and William awoke to a world without their sister. Jennie and her husband lay on their bed, held each other and cried. The next morning, taking advice from their book, they explained to Esther and William what had happened. At the time, they were two-and-a-half years old and struggled to understand why Matilda was not sitting in her high chair at the breakfast table. It took a few days for them to comprehend that baby Matilda had gone. Friends and family rallied round in the weeks and months following Matilda's death.

Included among those who gave presents and support were fellow bloggers, whom Jennie knew after creating her own blog after the twins were born. Now, Jennie mostly writes about Matilda. Her posts are raw, poetic, straight from the heart ("I just write it and publish it, I don't read it back"), and in so doing they are a form of therapy.

"Writing is how I grieve," she explains. "When you lose a baby, you realise how many other people have as well. I was up all night talking to people from all around the world, who just listened. It was their support and their messages that made me get out of bed on the morning of Matilda's funeral."

Every day, Jennie and her husband wrestle with questions that have no answer. There was no discernible reason why Matilda died; there was no disease, no fever, no heart problems. It's why they work so hard to raise money for The Lullaby Trust, in the hope that one day they will find an answer, and prevent other parents from experiencing the same tragedy they faced.

To date, through sponsored walks, online auctions, skydiving events and much more, Jennie and her family have raised about £30,000. Recently, Matilda's father ran the Brighton marathon in memory of his daughter. Despite the skin coming away from his heel, and every step feeling like fire, he finished the race, his daughter spurring him on to the finish line.

On the day of Matilda's first birthday, Jennie and her family took her ashes and scattered them over the River Camel in Cornwall. Every year, they return to the same place to spend Matilda's birthday with her.

They are making the journey in a couple of days, hence the packing. When they return they will take down the last of Matilda's things: her cot will be made into a writing desk.

A year after she died, most of Jennie's days are full of good memories of Matilda, as opposed to reliving her loss: "When my faith is really strong, I convince myself that there was something about her which felt like she didn't have very much time. She made sure that she made this huge impression on everyone that she met.

"On my strongest days, I think that she was supposed to come, be this larger than life person and then strike terror into hearts and make people realise that babies are vulnerable. I wouldn't have not had those nine months with Matilda for anything.

"When I think of her, the first thing that comes to mind is a photo of my husband holding her and she's just looking and her eyes are sparkling and she's poking out her tongue. I don't want anyone to forget that Tilda was here. We were lucky to have her."

  • For details on the work of the Lullaby Trust, visit lullabytrust.org.uk. Jennie also blogs at www.edspire.co.uk

Bedtime rules

While the exact causes of SIDS are not known, experts do advise parents of infants and young children of the do's and dont's to follow when putting a child down to sleep:

  • Always place your baby on their back to sleep
  • Keep your baby smoke free during pregnancy and after birth
  • Use a firm, flat, waterproof mattress in good condition
  • Breastfeed your baby, if you can
  • Place your baby to sleep in a separate cot or Moses basket in the same room as you for the first six months
  • Never sleep on a sofa or in an armchair with your baby
  • Don't sleep in the same bed as your baby if you smoke, drink or take drugs or are extremely tired, if your baby was born prematurely or was of low birth-weight
  • Avoid letting your baby get too hot
  • Don't cover your baby's face or head while sleeping or use loose bedding

An ongoing campaign ...

  • One prominent campaigner for awareness of cot death has been well-known broadcaster Anne Diamond. The former TV-AM host's son Sebastian died from the syndrome in July 1991
  • Diamond spoke movingly in public about the loss of her son and how it led to her involvement in the Back to Sleep campaign, which advised parents to ensure that babies slept on their backs
  • Following the campaign, there has been a significant fall in incidents of SIDS in the United Kingdom, from more than 2,000 cases per year to around 300

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